A great many of our friends and family have expressed worry over what to say to their little ones, as well as to Brooklyn and her siblings. I thought I would share what we've said to date, in case it helps anyone:
Brooklyn has a lump in her belly. The lump shouldn't be there, and even though we cannot see it, it is inside of her. The doctors are doing lots of tests and taking lots of pictures to try and figure out what kind of lump it is - the name of it - so that they can come up with a plan to remove it.
It may involve more medicine, it may involve more surgery, or a combination of those things. We don't know yet. We may even have to sleep at the hospital for awhile, as we did last week.
It's ok to be scared. It's ok to be angry. It's ok to want to scream and yell and cry and be quiet and not talk at all. All of those feeling are ok, but we've told all three of the kids they are absolutely NOT alone, that we all feel the same way and are all looking forward to Brookie being well again.
On Thursday, Nolan asked us how it got there.
Good question.
That one caught Jay and I both off guard, and so we answered like this:
Inside of our body, there are cells. Sometimes those cells can become confused and grow into things they are not supposed to grow into. Brooklyn's lump is a group of cells that grew in her belly, but they should not be there. We need to remove the lump in order to make Brooklyn better.
It's not Brooklyn's fault, or anyone's fault, that these cells grew in her belly. All we can do now is wait for the doctors to come up with a plan to make her all better.
As you can see, we haven't mentioned the big 'C' word yet, partially because it is not an official diagnosis, and partially because hypothetical statements will only cause anxiety and worry in our kids. We know this all too well, we've been living with it for two weeks now.
We will wait until all the facts are known before telling them any more.
A few well-meaning people have recently said to Brooklyn, "We are happy that you are all better." This is an incorrect statement, and we politely ask that you refrain from saying this to her.
She is taking a break from the hospital for a few days, until the doctors come up with a plan to help her. She is resting, healing and playing with her friends at school because those things feel good and are good for her to do. It is safe for her to play, and we are happy to see her go to school.
Finally, I've talked to her a lot about God and angels:
Angels can help you, when you are feeling sad or lonely or worried. Its important to ask your angels to help you. You can talk quietly to yourself, write them a letter or just say the words in your head. Mommy has been calling on all our family angels to surround us with love, white light and protection as we live each day.
God is also watching over you. We don't know why you have to go through this, but we know that God has made you a strong and beautiful girl capable of getting through whatever we have to do in order to be well again. We trust in God, even though this is the hardest thing we've ever had to do.
I hope this helps a few of you. Please encourage your kids to play with Brooklyn, love her up and tell her how much they missed seeing her. She's a beautiful five year old whose soul is fueled by spending time with her friends and family.
#TeamBrookie #WarriorPrincess
This blog was created in 2011 to capture my very personal journey of leaving full time work to become a work-at-home mother of three beautiful children. Naturally, this space has morphed into a place of personal reflection, celebration and sometimes even sadness. I’ve written about childhood cancer, food allergy and anaphylaxis, grief, marriage, friendship, parenting and everything in between, all with a growing sense of mindfulness and gratitude. Please, grab a cup of tea and stay awhile.
Saturday, January 30, 2016
Friday, January 29, 2016
Coping
Brooklyn has finally completed the last of the required tests.
Her only scheduled appointment next week is a surgical follow up from her biopsy.
Now we wait.
Wait for a diagnosis. A treatment plan. A timeline.
It's the scariest feeling ever, to know something so important rides entirely on others. Highly intelligent and well trained others, but still the lack of control takes my breath away more than once a day.
I feel sad.
Empty.
Anxious.
Shaky.
Weak.
I've really pulled into myself, the way a turtle crowds it's shell during times of danger.
I worry about my boys and the trauma this has caused each of them.
E has endured nightmares. He needs to know where I am going and when I'll be back. He asks lots of questions about where his siblings are, and he was so angry last week when we made it clear he wasn't allow to hug his sister because of her boo-boos. He cried the most gigantic, most heartbreaking tears last weekend as he spontaiously told me how hard it was to go from the babysitter's house to his grandparents' house and back. His entire routine was disrupted, despite our best efforts.
N is sullen, at times unable to decipher what he's feeling. He made a feeling picture with the Child Life Specialists yesterday, of our faces before B got sick and since B has been in the hospital.
This image brought me to tears. He is right and its hard to know he's hurting as much as we are, despite our attempts to be as warm and normal as possible. He is a feeler, a deeply emotional child, and he knows that this is serious.
When my mind wanders, I sometimes think about the worst case scenario.
Chemo. Hair loss. Extended hospital stays.
A daughter with self esteem issues... her first set of incisions really upset her.
And then sometimes I focus on the beautiful party we will have when this is all over with.
The music. The jumpy castle. The cold drinks and big hugs.
Tears of joy.
A chance to thank everyone for their support.
The entire next week is out of our hands, all there is left to do is pray that hope becomes reality.
I find myself too tired to pray these last few days, and so I am grateful for all of your spiritual dedication to my family.
xo
#TeamBrookie #WarriorPrincess
Her only scheduled appointment next week is a surgical follow up from her biopsy.
Now we wait.
Wait for a diagnosis. A treatment plan. A timeline.
It's the scariest feeling ever, to know something so important rides entirely on others. Highly intelligent and well trained others, but still the lack of control takes my breath away more than once a day.
I feel sad.
Empty.
Anxious.
Shaky.
Weak.
I've really pulled into myself, the way a turtle crowds it's shell during times of danger.
I worry about my boys and the trauma this has caused each of them.
E has endured nightmares. He needs to know where I am going and when I'll be back. He asks lots of questions about where his siblings are, and he was so angry last week when we made it clear he wasn't allow to hug his sister because of her boo-boos. He cried the most gigantic, most heartbreaking tears last weekend as he spontaiously told me how hard it was to go from the babysitter's house to his grandparents' house and back. His entire routine was disrupted, despite our best efforts.
N is sullen, at times unable to decipher what he's feeling. He made a feeling picture with the Child Life Specialists yesterday, of our faces before B got sick and since B has been in the hospital.
 |
| Left - before B became sick . Right - after B became sick |
When my mind wanders, I sometimes think about the worst case scenario.
Chemo. Hair loss. Extended hospital stays.
A daughter with self esteem issues... her first set of incisions really upset her.
And then sometimes I focus on the beautiful party we will have when this is all over with.
The music. The jumpy castle. The cold drinks and big hugs.
Tears of joy.
A chance to thank everyone for their support.
The entire next week is out of our hands, all there is left to do is pray that hope becomes reality.
I find myself too tired to pray these last few days, and so I am grateful for all of your spiritual dedication to my family.
xo
#TeamBrookie #WarriorPrincess
Wednesday, January 27, 2016
Any other day
It began like any other day.
My focus was on getting my kids dressed, packing lunches and loading them into the van in time to make the first bell. Nolan, age 7, and Brooklyn, age 5, love to play for a few minutes with their friends before classes officially begin.
Drop off. Check.
Coffee run. Check.
Morning visit with my wee man Ethan, age 2, to our local early years centre. Check.
Around 11 o'clock that morning E and I headed home. Thursday is our special day together, one I so cherish. I put his favourite show on TV and headed upstairs to make him some eggs for lunch.
Cue the phone.
I always check my call display before answering, and when I did, my heart dropped.
It was my kids' pediatrician's office calling.
In the three seconds or so that it took to pick up the receiver, my mind raced.
B had just gone the previous day for an ultrasound on her abdomen, specifically looking at her bladder. After recurrent UTIs, random unexplained constipation and complaints of it hurting to sit on the toilet, I asked her doctor to consider more testing.
I couldn't take her to that appointment as I was just beginning to teach my first week of the winter term, thank goodness my amazing parents jumped at the chance to spend time with B. The technician had told my mother it would be about 5 business days before results would be available to our doctor.
But the pediatrician's office was on the phone now, on this very normal, average day.
Asking me to come in regarding the results of the ultrasound.
I hung up the phone and my chest hurt.
Not 15 minutes later, the office was calling again.
This time, our pediatrician was on the other end.
"I've reviewed the results and referred you up to McMaster Children's Hospital. There is a mass in her abdomen which requires further investigation. I have spoken directly to the surgeon, he is aware of your case."
That day, two weeks ago, was just like any other day.
The same arguments.
The same requests for cooperation.
The same snacks in my kids' lunch bags.
Never, in my wildest dreams, would I have guessed our very busy pediatrician would call me at home. That McMaster would call the next day and tell us to come in three days later, promptly at 9am.
To be admitted.
To begin a very, very difficult two weeks.
CT scans.
IV drips.
Blood work.
Urine samples.
Biopsies.
Hearing and eye tests.
Echos.
Bone marrow biopsy.
Bone scan.
MIBG scan.
Days so long, tears flowing uncontrollably and questions nearly impossible to answer:
"Why do they keep touching me? They make me feel worser Mom! Make it stop!"
"How many more tests mommy, I hate tests!"
"Why can't I eat, mommy? They never let me eat here!"
"Mommy I am not sick. I am fine. Take me home?"
Seeing my little angel, my precious baby girl, in pain. Suffering at the hands of the people who were put in place to help her. Feeling entirely helpless, hopeless and trembling at the thought of one more wheelchair ride, one more gurney trip around the hospital.
Watching her little eyes close, body full of drugs, knocking her into a deep sleep over and over again for the sake of something that did not exist a few weeks ago.
Trusting strangers to care for my baby as they would their own, and begging them to do everything in their power to make her well again.
...
The day began like any other day.
Two weeks ago tomorrow.
Yet the following 14 days have been the furthest from that day.
And while these have been the single most difficult two weeks of my life as a mom, wife and woman, I can see with very clear eyes how lucky we are.
Yup.
Its only taken two weeks to complete all the tests necessary for a proper diagnosis.
The hospital is only one hour from our home.
We are surrounded by family, friends and even perfect strangers who continue to fuel us with kind words, meals, gifts and hugs.
Love is plentiful.
Hope is visible.
Faith, while being tested, is a strong and capable companion.
Please pray, for Brooklyn and all children who's lives have been anything but any other day.
#TeamBrookie #WarriorPrincess
My focus was on getting my kids dressed, packing lunches and loading them into the van in time to make the first bell. Nolan, age 7, and Brooklyn, age 5, love to play for a few minutes with their friends before classes officially begin.
Drop off. Check.
Coffee run. Check.
Morning visit with my wee man Ethan, age 2, to our local early years centre. Check.
Around 11 o'clock that morning E and I headed home. Thursday is our special day together, one I so cherish. I put his favourite show on TV and headed upstairs to make him some eggs for lunch.
Cue the phone.
I always check my call display before answering, and when I did, my heart dropped.
It was my kids' pediatrician's office calling.
In the three seconds or so that it took to pick up the receiver, my mind raced.
B had just gone the previous day for an ultrasound on her abdomen, specifically looking at her bladder. After recurrent UTIs, random unexplained constipation and complaints of it hurting to sit on the toilet, I asked her doctor to consider more testing.
I couldn't take her to that appointment as I was just beginning to teach my first week of the winter term, thank goodness my amazing parents jumped at the chance to spend time with B. The technician had told my mother it would be about 5 business days before results would be available to our doctor.
But the pediatrician's office was on the phone now, on this very normal, average day.
Asking me to come in regarding the results of the ultrasound.
I hung up the phone and my chest hurt.
Not 15 minutes later, the office was calling again.
This time, our pediatrician was on the other end.
"I've reviewed the results and referred you up to McMaster Children's Hospital. There is a mass in her abdomen which requires further investigation. I have spoken directly to the surgeon, he is aware of your case."
That day, two weeks ago, was just like any other day.
The same arguments.
The same requests for cooperation.
The same snacks in my kids' lunch bags.
Never, in my wildest dreams, would I have guessed our very busy pediatrician would call me at home. That McMaster would call the next day and tell us to come in three days later, promptly at 9am.
To be admitted.
To begin a very, very difficult two weeks.
CT scans.
IV drips.
Blood work.
Urine samples.
Biopsies.
Hearing and eye tests.
Echos.
Bone marrow biopsy.
Bone scan.
MIBG scan.
Days so long, tears flowing uncontrollably and questions nearly impossible to answer:
"Why do they keep touching me? They make me feel worser Mom! Make it stop!"
"How many more tests mommy, I hate tests!"
"Why can't I eat, mommy? They never let me eat here!"
"Mommy I am not sick. I am fine. Take me home?"
Seeing my little angel, my precious baby girl, in pain. Suffering at the hands of the people who were put in place to help her. Feeling entirely helpless, hopeless and trembling at the thought of one more wheelchair ride, one more gurney trip around the hospital.
Watching her little eyes close, body full of drugs, knocking her into a deep sleep over and over again for the sake of something that did not exist a few weeks ago.
Trusting strangers to care for my baby as they would their own, and begging them to do everything in their power to make her well again.
...
The day began like any other day.
Two weeks ago tomorrow.
Yet the following 14 days have been the furthest from that day.
And while these have been the single most difficult two weeks of my life as a mom, wife and woman, I can see with very clear eyes how lucky we are.
Yup.
Its only taken two weeks to complete all the tests necessary for a proper diagnosis.
The hospital is only one hour from our home.
We are surrounded by family, friends and even perfect strangers who continue to fuel us with kind words, meals, gifts and hugs.
Love is plentiful.
Hope is visible.
Faith, while being tested, is a strong and capable companion.
Please pray, for Brooklyn and all children who's lives have been anything but any other day.
#TeamBrookie #WarriorPrincess
Thursday, January 14, 2016
Mom friends, unite
Mom friends, I need to talk to you.
Thank you for being honest.
For posting photos of your worst parenting moments.
For crying out for help when you couldn't stand one more minute with your kids.
For laughing hysterically at my mishaps, and letting me do the same at yours.
Thank you for reserving judgement.
When I admit I've just pulled into the McDonalds drive thru with tears in my eyes.
When I couldn't go out for drinks because I didn't have $10 in my wallet to spend.
When I wore the same faded pair of yoga pants for the third day in a row.
Thank you for listening.
About my larger-than-life worries regarding fevers, ear infections and immunizations.
About my feelings of failure, disappointment and utter dismay at being a mom.
About the moments that made me cry deep, dark tears from my soul.
Thank you for being my cheerleader.
For sending virtual hugs that reassured me I was worth it.
For the messages of love when I was sick, run down and crawling out of bed.
For the acts of kindness that filled my heart with gratitude and love for our friendship.
The truth is, we're all in this together.
And its the hardest thing we've ever done.
We need each other more than ever.
And we need to stop comparing ourselves to each other.
The choices you make, may not work for me.
Your beliefs will not match all of mine.
How I choose to parent may not be comfortable for you.
And that's ok.
Let's make the conscious decision to support each other with love, kindness and genuine appreciation for our individual journeys. Can you imagine the example we can set for our children?
Mom friends, unite.
Thank you for being honest.
For posting photos of your worst parenting moments.
For crying out for help when you couldn't stand one more minute with your kids.
For laughing hysterically at my mishaps, and letting me do the same at yours.
Thank you for reserving judgement.
When I admit I've just pulled into the McDonalds drive thru with tears in my eyes.
When I couldn't go out for drinks because I didn't have $10 in my wallet to spend.
When I wore the same faded pair of yoga pants for the third day in a row.
Thank you for listening.
About my larger-than-life worries regarding fevers, ear infections and immunizations.
About my feelings of failure, disappointment and utter dismay at being a mom.
About the moments that made me cry deep, dark tears from my soul.
Thank you for being my cheerleader.
For sending virtual hugs that reassured me I was worth it.
For the messages of love when I was sick, run down and crawling out of bed.
For the acts of kindness that filled my heart with gratitude and love for our friendship.
The truth is, we're all in this together.
And its the hardest thing we've ever done.
We need each other more than ever.
And we need to stop comparing ourselves to each other.
The choices you make, may not work for me.
Your beliefs will not match all of mine.
How I choose to parent may not be comfortable for you.
And that's ok.
Let's make the conscious decision to support each other with love, kindness and genuine appreciation for our individual journeys. Can you imagine the example we can set for our children?
Mom friends, unite.
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